How do you explain HMS to colleagues/friends/family??

[vixenmeister]

Hannah that's a fab analogy and a brilliant idea - I'd forgotten they exist!

Vix

[Blaadyblah]

I have one of these in my handbag, I use it to explain EDS and it does work.

[vixenmeister]

Blaady and Hannah - I've just remembered Father Christmas gave me a fairy with string joints a few years ago I'll have to dig it out. Maybe it should be a teaching device for medics as well!
Thank you both.

Vix

[lil_miffy]

people always ask me 'what do you see like' or 'how much can you see'
a ive never seen normal its real hard to answer. so best i can come up with is tell them to shut their right eye and scrunch the left till it goes blurry. then imaging instead of a wide screen tv view they have and old type suqare box to see though.

its far more compilcated than that but i think it helps sometimes.

in terms of hms im only just learning what i expereince isnt normal. in explaining it to people ive been saying im much more flexible than normal. this means my muscles work hard to keep me upright so i get alot of pain and exhaustion.

[Immy_R]

Hi

I tried to talk to my mum today about my condition, i just wanted to talk to someone about new things ive learnt and how to cope with it, she seemed uninterested and carried on and called someone whilst i was trying to talk to her. It was so rude , my family has never understood the requirements i have for my condition and it makes me depressed. Its hard because my mum doesnt speak great english and i think its a cultural problem for me as well. Sounds bad but i think many older asian women dont seem to want to expand their minds and grow. Its as though occupational therpay doesnt exist, and studying these things is for doctors. Some days i really feel like ive had it.

whats worse is that they do building work to the house and never stop and consider my requirements. i know its probably not an asian thing just perhaps general ignorance but i do think theres lack of awarness in british asian families regarding these matters.

[aninja]

Hi Immy,

I really do understand what you mean about family not understanding and also not wanting to.
I wish those of us with HMS/EDS could live in blissful ignorance so easily.
I recently had a conversation with my mum(she left when I was 1yr old and my dad brought me up) so things have never run smoothly with my mum. I talked to her in preparation for a hospital visit at which I know they will ask about family history.

She simply told me it was not my business whether 'her family' was affected or not. Me thinking it would be mutually benficial to know!

I think the biggest problem in our society is not cultural - it is one of selfishness!

aninja
xx

[Eloise]

Couldn't agree more aninja!

My friend / collegue yesterday who had been b***h about me behind my back. I think she is too selfish to want to actually put time aside to try and understand things from another point of view. If they people don't fit in her box of doing what she expects - then she doesn't have the time to try and work out why.

Hi Immy,

I do understand it can be harder for aisian families, I have seen it at work - that many asians don't like to admit there is any sort of problem in their family - as they seem to think it will reflect badly on the family as a whole. But I think it is just a more noticeble expression of what the majority of other cultures are doing already!

Ignorance is definitely all around us - I am just greatful for the small number of really good friends I do have.

[Immy_R]

thank you for your support.

i agree its not an asian thing but one of ignorance. my newphew is also hms, hes 4 years old and i think my life has taught me how to help him, my sis in law may be learning baby yoga massage techniques for children with joint problems. she wants to educate the families i think its so important , because the family and freinds not understanding causes emotional pain it justs make its all harder. see they buy me chairs and i can tell by looking at it it will hurt for my to use them after sometime, they dont stop to consider the effect their ignorance has on other people. i also find many dont actually read. having hms doesnt mean i cant play sport or live a fantastic life which i do but it does mean at times ill be sore and im not being a winger by saying i hurt today,and today i cant help out i just need some rest time. there really is a lack of awarness. and i find my family either over react or the complete oposite.

it may be an idea to produce some leaflets for educating family , thats if there arnt any already im sure there are but a thought , or perhaps even a basic website giving some awarness with diagrams hmm who knows.

[lil_miffy]

my parents jut think im lazy and moaning for nothing. cos mam has fibromyalgia and arthritus in her spine if shes not completely bed ridden shes up and forcing herslef to do someform of housework.
so she thinks that my pain is nothing to compalin about. and that my tiredness and utter sudden exhaustion where i cant even stand up is just me not getting out enough and getting into bad habit of napping in afternoon.

i wish it was a habit cos then i could just stop doing it. i dont think oo i coud do with a nap. its like been hit by a truck. its not tried ness its so much more than that. sometimes i force myself to stay awake but il be sat on sofa and almost crying wtih how heavy my body feels.

i just wish they would undertand. even if i went to gp and got diagnosis they wouldnt get it cos mums always gonna be more worse off than me and if she can manage to hoover the front room then im able to go out be active.


sorry just realise that turned into bit of a rant

[millie]

aninja, Your post was interesting. Do you think your mum didn't want to comply incase it was like blaming her ? I remember getting diagnosed and my mum and dad kinda arguing over who's "fault " it was. comments like " well theres nobody in my family like that, but I'm sure your sister was a bit bendy !" (quote from my mum to my dad ) . I think it was like they felt admitting to having a family member with similar difficulties was like a genetic defect, poor breeding or something stupid like that. Desperate to try and say " hey my family are all healthy so it's not my fault !" Crazy really.

immy and lil_miffy I know what your saying I always get a feeling that people think it's selective when I am not able to do stuff, or when I'm tired. I always hear people saying "yeh I was shattered last night too" . Their shattered doesn't even touch mine. I can't even talk when I'm bad and all my limbs feel like lumps of lead ! Just have to accept that people can't understand generally unless they experience it themselves.

[Tiz]

My current method of explaining to people is to let them read my HMSA membership card, some people do seem to think that's a bit odd but the card explains much more thoroughly then I ever seem to manage and it's less traumatic than trying to find the right words myself. Once they've read the card they tend to ask if I'm going to get better to which I reply that the condition is genetic and therefore I'm stuck with it, there is potential for individual problems to improve or worsen but on the whole it doesn't look good. Usually people respond with something along the lines of "d**n!" (well usually a bit stronger than that), most people have been pretty sympathetic, some quite clearly don't know what to say and just look a bit awkward, generally everyone's been pretty cool, but then I'm pretty lucky in my friends anyway so I wasn't expecting any bad reactions.

[Eloise]

Well, today at work I have sucessfully trained one Medical Student about HMS!

I was working at the GP practice, and at lunch time sat in the common room eating the lunch the drug reps had brought in for the doctors, and there was a new medical student doing his placement. The drug reps had disappeared and so had the only GP that could be bothered to come upstairs and get some food and a couple of the admin people came in who hadn't seen me for a while and asked how I had got on seeing Prof Bird - so I explained.

The medical student was really interested so I explain all about the collagen etc and that is does cause pain. He listened really well and took it all on board. So there you have it - in the next lot of new medical students - one knows about HMS!

[Englishgremlin1]

that is good news and an opportunity well taken. I used to live in Newark so if I fall over there a chance of findong a young doctor who knows about things.

[Eloise]

Not sure whether I should put this in insenstive comments - but it was me giving out the insensitive comment - so I thought here was better.

My boss has really badly hurt his ankle and if hobbling around and moaning like mad how long it takes him to do anything etc etc etc. And the thing was - the only thing I could think of saying (and did so often) for the majority of the time was: "Welcome to my world!"

So everytime he moaned - I just replied - "welcome to my world" - got a bit annoying - but I think he and everyone else in the room got the point! (I am having a "hit by a bus" day today - so I had little sympathy.

[millie]

ha ha yeah I toatally understand Eloise, I've said that too and tonight my son said he was away for a lie down as he was "exhausted" after a DRIVING LESSON !!! I said u don't know what exhausted is try and be in my body for a day or two! ( also having major pain day, and dealing with after effects of physio torture !). Actually I felt a tad guilty as I know he also has HMS and he probably was exhausted .